TGIF - Thank God (AKA Morgan Freeman) I'm Fabulous

Thursday 27 June - 1am

Here I am at 1am lying in bed with a seriously dodgy stomach. I'm scared to go to sleep in case (God forbid it) I accidentally 'shart'. The shame of it. Can you imagine actually shitting the bed? Ah man, I just want to be normal. 

My new tablets (amitriptyline) have given me the worst constipation ever so I resorted to desperate measures and took a load of laxatives the day before yesterday. Nothing happened. I took some again yesterday and NOTHING. So I just took another load again tonight and now I'm scared. Really scared. I'm scared to move or  laugh. I thought I'd take my mind off it by blogging. I'm not sure you want to read about this but hey, its relative as its about the side effects of my meds - I'm not just some random girl talking about sharting for the hell of it. This is my life right now. This is serious.  Lupus aint fun man.

I've had a rough day today. I've mostly been in bed in a lot of pain feeling extremely weak and totally sorry for myself. Poor, poor me.  The pain hasn't been all over my body, just in my hands but its been intense, like nerve pain. I was crying at one point which is not something I usually do. I finally managed to conjure up a tiny amount of energy to have a bath at about 3pm, got back in my pj's and mixed it up a bit by lying on the sofa in the living room instead of going back to bed (highlight of my day that was) and that's pretty much where I stayed.

I found out Sinead O'connor has fibromaylgia - apparently she gave up working for years because of it. Also, Morgan Freeman has it too. I was like, wow! God has fibromyalgia.  
I don't know why but I always see Morgan Freeman as God. Maybe because he plays God in quite a few movies? I'm not sure. Is that weird? 

Sami's mum had an operation today to correct some previous surgery so I suggested to her husband if she has to stay in overnight we can go to Pizza Express for dinner rather than him be home alone but luckily Viki was allowed home. So hopefully she will recover nice and quickly and be back to her fittest self in no time. 

I had my hair cut yesterday which was a nice treat, courtesy of my lovely Mummy. She treated us both and I must say, I'm rather pleased with the result! Feel like I haven't had decent hair for aaaagges. I also had it coloured the day before courtesy of Sami's mums friend and ex colleague, Janet. She did some lovely hi-lites for me and for a very good discounted rate. I am very pleased indeed.  And here's a nice selfie for y'all...for some reason this light makes my roots look darker than they actually are..

Prior to having my hair cut I went to see my GP to discuss how low I've been feeling recently and she has referred me for some counselling so I should hear back soon. She also explained to me that fibromyalgia can cause a chemical imbalance in the brain thus causing depression (yeah I just used the word 'thus') which I found interesting. She also said that perhaps I should be on an anti-depressant. Like a proper one not the one that I'm on to relax my muscles. I understand her reasoning but I'd much rather try alternatives first as opposed to swallowing even more tablets - who knows what they do to our bodies?? We'll see what happens. It was nice to go and have a chat with someone who took the time to listen to what I had to say. 

I haven't been feeling too bad this week, I feel down with all the pain etc but in a 'normal' way not in a 'Ohmygod what will kill me quickest - jumping out the window or putting my head in the oven?' Kind of way. So I would say its been a good week!

I'm so glad tomorrow is Friday. I know I don't work anymore so everyday should feel like the weekend but Fridays are just great. Everyone's happy. 

This weekend my plans are to go out on Saturday night and the rest of the time I'll be chilling and moaning about my life! I'm seeing my bestie for lunch tomorrow before she heads off on holiday and that's it. I was supposed to go to a charity gig for the meningitis trust at my old school tomorrow but I've been feeling crap all week so decided I should leave it. Its for an old school friend who is in a band (Urban Prophecies) sadly his daughter contracted meningitis and had to have her legs amputated - I'm happy to say that she got through it and is one of the most inspiring and beautiful little girls ever. So as I'm not attending I shall make a donation to the trust anyway.  

Here is a link to their song for the Meningitis Trust....http://www.youtube.com/watch?v=EDc8FahNOM4 

Going to have a girly one on Saturday (hopefully I'll be able to) and head out to a Turkish restaurant. I'm really looking forward to it.  No idea what to wear as the sun has caused me some troublesome symptoms such as a rash all over my legs. If you are not aware, most people with Lupus are sun sensitive. The suns UVA and UVB rays can cause Lupus to flare. People get different symptoms such as skin rashes, dizziness, fatigue, nausea, joint pain and some people's lupus can flare up so bad they can become seriously ill with organ involvement. 

I have never really had any adverse effects from the sun but the past few days I have noticed I feel a lot worse if I've been out for a while. I get home and feel like absolute shit, much worse than when I went out. I feel sick, dizzy, really tired and weak - I couldn't even cook Sami dinner yesterday. I couldn't even open a bottle of water - I was a state! Also, my skin itches like a bitch and my legs are bright red.  I'm going to have to get into the habit of covering up and wearing factor 50. Fun times. Maybe I'll get a sun umbrella and walk around like I'm Joan Collins. 

Right, I'm going to try to sleep now. Wish me luck! Poor Sami. Its him you should feel sorry for - he has to put up with me!

G'night. Xxxx 

You can't have the rainbow without a little rain

Obviously, when you have been a healthy person your whole life and one day you are diagnosed with a life-long and shitty illness a lot of things change and you enter a whole new world.  In my case I've entered a world where you appreciate everyday that you're able to get out of bed.  Just now I was really enjoying doing the washing up (I know!) because the hot water felt good on my stiff hands! AND it felt great that I was able to do the washing up.  Yipppeee!

Since entering this weird new world I have found a lot of things to be very strange indeed. For instance I remember being amazed that I have an illness that has a charity.  A charity. People actually jump out of planes and shit to help people with Lupus. Wow.

Another thing that is really weird, is even after two years I still find it difficult to swallow a tablet. 

Its so stupid.  I put it in my mouth and have a little argument with myself, "Go on! swallow it you twonk!" Then I'll go. "I can't! I'm scared!"  I almost have to pluck up the guts to do it.  This is EVERY night with all 12 tablets.  It takes ages.  Sami just looks at me like, "What are you doing you weirdo?"

Do you know he says I'm the weirdest person he knows.  He said I'm weirder than Sheldon off The Big Bang Theory.  That's just rude.  I'm not weird....Am I?

I remember being so sad that I'd never have a natural tan again.  For those that aren't aware, Lupus symptoms can be exacerbated by the sun and people with lupus can become very unwell after UV exposure.  Something to do with the sun making the cells move faster and triggering a lupus flare.  Skin rashes can flare up too.  So its factor 50 and the shade for me nowadays.

I decided to get a spray tan last summer to try and make myself feel better.  I will NEVER ever get one again.  It was so bad that when Sami saw me he actually screamed.

The salon is a good 20 min walk from home and I RAN all the way.  People were staring at me and one little girl said, "Mummy why did that lady paint herself?" I was BLACK.  So not a good look for a white English/Irish girl with fair hair.  I wish I still had the pic to show you but sadly I don't.

Those are just some of the odd things, I'm sure there are many more.

I do actually think I'm a nicer person now. Not that I was a horrible person before but I can certainly empathise more with people who have shit to deal with.  But then on the other hand, I'm a lot less tolerant   of (annoying) people.  Such as people who have no real problems at all that just moan and moan for no reason, I want to punch them.  I just wish I could say 'GO AWAY!'

BUT people who have never really experienced tough times do not understand how lucky they are.  So they don't realise how douchey they sound.

I remember when I used to have my hair done, if it wasn't perfect I would go MENTAL. Like 2 year old tantrum stylie.  Then when I was on the Azathioprine and my hair went really thin and started coming out I said to myself I will never moan about my hair again.  And I haven't.  But it took that for me to realise how stupid I was being.  People that moan about their hair as well. Ohmygod. I understand that they don't realise but still, sort it out will you.

So what I'm trying to say is that you can't have the rainbow without a little rain.  You need the shitty bits in life to make you realise how fortunate you actually are and to appreciate the good things.  Stop and smell the roses people.  They smell goooood!

I've used up all my sick days so I'm calling in dead

After my marathon sleep sesh yesterday I woke up for a wee while, had dinner, wrote some shit and got back into bed.  Come 'normal' bed time I was still knackered despite having slept most of the day. However, sleep was not something I got much of last night. 

Our neighbours decided to have the biggest argument ever. It sounded like two guys and a girl. One of the guys was crying and screamed so loud, I've never heard anything like it. We've lived here 3 yrs and never had any issues whatsoever. Then these douches moved in about 6 months ago. We usually hear them doing it as opposed to arguing and I'm sure there are too many of them in that flat as well. Not sure. Will keep our eyes open.  Haha! Well Sami will and I'll try to keep them open longer than half an hour! Lols.

So I woke up this morning, even more exhausted, in pain all over and a thumping head ache, like those ones where it hurts to open your eyes. I called in sick which makes me feel really guilty but I would be no use today.  I hate it, I felt like saying to my boss, 'Hi, sorry I've used up all my sick days this year so I'm calling in dead.'    I saw that quote on one of those ee cards once and I thought I'm defo using that one!

I couldn't have gone in today I'm half asleep writing this and typing is hard work, I keep forgetting how to spell stuff and my hands are really stiff. Sami took one look at me this morning and just said no, you've got to stay here today. So here I am, writing this from my bed again. 

I need to find the energy to change the duvet covers - I sweated like a beast last night. Sorry for the gory details but these night sweats are horrendous. Once the arguing stopped and I finally got to sleep, I woke up about 4 times, each time soaked. Even my hair was wet. So gross. I asked the doc about these night sweats and he just said its one of those lupus things. Lovely. Sami goes to hug me in the night and soon changes his mind! Lol poor bloke. We shouldn't laugh but sometimes you have to. 

As I've been in bed for the past few days I've obviously had a lot of time to look out the window and I thought this view last night was particularly lovely: 

Definitely got to appreciate the small things in life. 

Hopefully a nice rest today will allow me to go to work tomorrow.  I don't want to spend another day in bed. Its boring. Oh crapety crap, I am going to be sooo bored when I leave work in a few weeks....however it has to be done so I'll just have to get on with it and try and find a way to enjoy doing nothing for a bit.  

Thank god I enjoy writing, it gives me something to do! I didn't realise how much I love it until I started doing this blog. I love talking so I guess it makes sense to love writing too!

Its been an amazing form of therapy. I can just get all my feelings off my chest and go about my day without thinking about it all. I highly recommend it. 

Right, I'm going to attempt to get in the bath now then I'm going to change the bed sheets, take some tramadol and sleeeeeep. Mmmmm I love the feeling of fresh bed sheets. 

I hope you all have a great day. Xx

Gin & Tonic

Monday 8 April 2013 

I had my quarterly check up at St Thomas' Hospital in London today.  It went OK.  I wanted to discuss my current medications as it seems like they aren't working.  The doc said he doesn't want to change them just yet as we need to figure out why I've had such a bad few months.  He thinks all the infections I've had could have triggered the lupus to flare so badly, although he is not entirely sure.  He has therefore decided to keep me on current meds plus steroids.  Fecking steroids.  (See post titled 'steroids' for information on why I hate them)  I have to take a high dose for a couple of weeks to see if it makes me feel better  then we'll discuss the results in July. 

These appointments can be very frustrating because you want to go there and hear them say, "Here you go, take this and you'll be fine,  your lupus will go away forever!"  Obviously that doesn't happen so you have to just accept what they tell you and get on with it.

I only had 9 blood tests today (I usually have between 15-20, he's very thorough this guy!)  He was checking my renal and liver profile and various other things such as certain anti-bodies that cause problems in Lupus, it's amazing what they can tell from your blood!  He said he will write to me if he finds anything 'exciting'.  He really is a nutty professor.  I love him, with his elbow patches and bow ties.  

We had quite a long chat today and he told me that when someone with Lupus gets an infection or even just a common cold its worse than in a normal person.  Apparently we feel it a lot more (plus an infection/cold triggers the lupus to flare so on top of feeling ill you get all the joint pains/fatigue etc)  I am so glad he confirmed this and I'm not just the worlds biggest wimp.  I had tonsillitis last week and I think it's the most ill I've ever felt!  Talking of being  a wimp, the psycho nurse who did my blood test today really hurt me!  I actually said 'ouch!' out loud.  I think she was using my arm as some kind of  therapy.  You know like when you go to a boxing class and you imagine the punch bag to be someone you hate? Yeah, well she was definitely imagining stabbing someone she hates.  I'm not sure if I should be doing her for assault or not.

The doc also told me today to drink gin and tonic.  For medicinal reasons.  Apparently the quinine in tonic is good for lupus.  I said, "What's the gin for then?"  He said, "Why not?"  That's fine by me! 

I'm currently writing this in bed - I am EXHAUSTED today.  I got home about 2pm and have been asleep most of the day (it's 7pm now).  I usually go for a nice lunch and trip round the shops after a hospital appointment (I go and visit the shoes in Selfridges) but today I had to come home =0( and get in my pj's.  Sami even had to collect me from the train station because I couldn't face the 15 minute walk home.  What a joke.  I wonder if I can get a mobility scooter based on being too tired to walk anywhere? 

Lupus and Relationships

How does Ill health affect your relationship?

People often ask me 'When is Sami gonna put a ring on it?' Which is fine, this is a perfectly natural question to ask as we've been together for 5 years now and a year or so ago, when my health wasn't such an issue I was wondering the same thing.  However, I must add that I have always been happy for Sami to take his time as I'd never want to be one of those desperate and pushy girlfriends who basically forces their other half into it.  (Although, I do enjoy singing along to Beyonce's 'Single Ladies' whenever it comes on the radio for a bit of a wind up!)

Anyway when you have an illness and have been really, really unwell things change.  Your outlook, your priorities, the way you think and feel and now for me, marriage just isn't at the top of the to do list. 

These days I tend not to think too far ahead as it is a challenge (and an achievement) just to get through the day.  It really is one day at a time at the moment.

How could I contemplate planning a wedding when I can't even plan a day out a week in advance for fear of being too ill?  How could I even think about it when most days I'm not even awake!  My health is just too unstable at the moment.  So the answer is, Sami and I will get married when the time is right for the both of us.  When Sami is ready to make that commitment and I'm not half dead.  The most important thing is that we are happy and I realise that now more so than ever.

As for babies well thats a whole different story as my health may pose some challenges so we will have to wait and see.  Right now its just about us and I'm not ready to share Sami just yet!

Another thing people ask me is how does Lupus/chronic illness affect your luuurve life? Well, I'm not prepared to go into details as that stuff is private but lets just say you make the most of the good days.

Some people may not be able to stay with a partner who is chronically ill.  It's very stressful for everyone involved and certainly does test your relationship.  In mine and Sami's case I would say it's actually brought us closer together and made us stronger.  He has stood by me through it all and is so supportive.  He really is my rock.  He would do anything just to make me smile and he is constantly making me laugh with his dry, silly sense of humour and intelligent wit (he is definitely the funniest and most intelligent person I know)

If it was the other way around I don't think I'd cope.  I just couldn't bear to see Sami in pain.  I'd be so angry with the world.  I would much rather be the sick one, 100% I'd always choose to be the sick one.  Which is funny because Sami always says he doesn't know how I cope.  He says, 'If I was you, I'd be a complete mess!'  So I guess its worked out quite well then.

I do bear a lot of guilt as I hate knowing he worries about me and I always say, 'It must be so hard for you.'  He smiles and says, 'Darling, its a million times worse for you.'  

If I didn't have Sami in my life I really don't know what I'd do.   I am very lucky indeed.

So how has lupus affected our relationship?  Weirdly, I think its made it even better  than it was,  its made me realise just how much Sami loves me and how much I love him, the fact that we can get through something like this makes me think we can get through anything.  I appreciate him more and never take anything he does for granted which is all too easy to do.  I feel like our relationship means more than before because he has helped to be strong and remain positive even when all I want to do is hide away from the world.

Here he is....

My rock, my world, my bestest friend xxxxx